Hunt the Devil : A Demonology of US War Culture

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Studies also showed positive outcomes for effectiveness of culture change models in terms of QoL, ADL function, restraint use, and other outcomes, however more research is needed. The review was limited to experimental and quasiexperimental studies, published in English and involving direct care workers. Seven studies were included and addressed different person-centered care approaches, including DCM; stimulation-oriented approaches, such as recreational therapy storytelling or multisensory stimulation Snoezelen ; emotion-oriented; and behavioral-oriented approaches.

Fritsch and colleagues, as cited by Barbosa et al. Finnema and colleagues, as cited by Barbosa et al. Schrijnemaekers and colleagues, as cited by Barbosa et al. Wells and colleagues, as cited by Barbosa et al. Jeon and colleagues, as cited by Barbosa et al.

Barbosa and colleagues stated that methodological weaknesses and heterogeneity among studies make it difficult to draw firm conclusions. However, five of seven studies reported benefits on dementia care workers, suggesting a tendency toward the effectiveness of person-centered care on staff. However, emotion-oriented approaches were comprised of multiple components e. Finally, one of two behavioral-oriented approaches, which adopted a nonrandomized design, showed a reduced burnout in direct care workers Barbosa et al.

As a group, these studies provide some of the strongest evidence available as the staff-related benefits of person-centered care models. Additionally, reduction in stress, burnout and job dissatisfaction may also lead to reduced staff turnover—a significant challenge within long-term care. Brownie and Nancarrow performed a systematic literature review, resulting in nine articles seven studies that met the inclusion criteria.

There was one randomized, controlled trial, while others were quasiexperimental pre—post-test designs. The studies included in the review incorporated a range of different outcome measures to evaluate the impact of person-centered interventions on residents and staff. Brownie and Nancarrow found that person-centered culture change interventions were not homogeneous or single-element interventions. Brownie and Nancarrow found that the Eden Alternative was the only intervention identified in this review that articulated a framework incorporating all features for a person-centered approach to caring for older residents, and improving staff working conditions.

In contrast, other types of person-centered interventions were community-specific that focused on one or two features. Three Eden Alternative studies met the inclusion criteria for this review. Coleman and colleagues, as cited by Brownie and Nancarrow , found that environmental enhancement was actually associated with adverse outcomes for residents in an Eden Alternative community, compared with residents in a traditional control nursing home.

In this study, the residents in the Eden Alternative community were on average younger than those in the control community One Green House model study met the inclusion criteria for this review. Three community-specific person-centered care studies met the inclusion criteria for this review. Lastly, Brownie and Nancarrow described a large Australian study that randomly assigned residents across 15 care communities to receive person-centered care, dementia care mapping, or usual care.

The communities were selected because they used a task-focused, rather than a person-centered, approach to care and were similar in terms of management structures, staffing, standards, and size. Agitation was significantly lower with both person-centered and dementia care mapping than usual care. Brownie and Nancarrow concluded that forming accurate conclusions about the impact of person-centered interventions on residents and staff is hampered by the heterogeneity of the interventions and significant methodological differences between studies.

Overview of Person-Centered Assessment

However, person-centered interventions are associated with positive influences on staff outcomes satisfaction and capacity to provide individualized care ; improvement in the psychological status of residents lower rates of boredom and feelings of helplessness ; and reduced levels of agitation in residents living with dementia. While more research into the cause of increased risk for falls is needed, it may be possible that residents are more at risk for falls when they are ambulatory and active as opposed to being sedentary and prone to sitting or laying down for much of the day.

As noted, person-centered care exists within the larger movement of culture change, a broad-based effort to transform nursing homes from interpersonal health care institutions into true person-centered homes offering long-term care services Koren, After much work in the early s among various organizations and advocates, the Pioneer Network took the lead in fostering the culture-change movement within nursing homes. The culture-change movement espouses a set of principles, instead of offering a prescriptive set of practices or dictating conformance to a model.

Early in the culture-change movement, there was a lack of agreement as to precisely how all of these changes would manifest themselves in a nursing home transformed by culture change. Over the years, various models have been evaluated and research has demonstrated results. However, there is still much work to be done to identify outcomes and support the overall business model.

Koren stated that several aspects of the nursing home field, including its workforce, regulation, and reimbursement, limit the initiation of culture-change practices. Culture change requires dedicated leadership over a period of years, a stable workforce, the buy-in of nursing, and funds for environmental improvements Koren, What this literature review establishes is that there is nothing clear-cut about demonstrating scientific evidence for complicated, individualized, psychosocial interventions such as person-centered care.

Overall, the research has limitations including sample sizes, varied interventions within person-centered care models and finally, a paucity of funding and incentives for psychosocial research. Most certainly, more research is needed to continue to understand how to effectively measure person-centered care, what elements are required to make a difference and how does all of this translate into everyday care delivery practices.

However, when examining person centered care through the combined aspects of available evidence mostly in residential communities , current best practices, expert opinion and common decency, it becomes clear that providing care based on knowing the person within the context of an interpersonal relationship in a way that supports individualized choice and dignity is difficult to argue against. While the evidence in support of person-centered care models and interventions may not be wholly conclusive, there is sufficient evidence to support the following recommendations.

The individual living with dementia is more than a diagnosis. This information should inform every interaction and experience. It is important to see the world from the perspective of the individual living with dementia. Every experience and interaction can be seen as an opportunity for engagement. Engagement should be meaningful to, and purposeful for, the individual living with dementia. It should support interests and preferences, allow for choice and success, and recognize that even when the dementia is most severe, the person can experience joy, comfort, and meaning in life.

Persons living with dementia should be part of relationships that treat them with dignity and respect, and where their individuality is always supported. This type of caring relationship is about being present and concentrating on the interaction, rather than the task. A supportive community allows for comfort and creates opportunities for success. It is a community that values each person and respects individual differences, celebrates accomplishments and occasions, and provides access to and opportunities for autonomy, engagement, and shared experiences.

Several tools are available to assess person-centered care practices for people living with dementia. It is important to regularly evaluate practices and models, share findings, and make changes to interactions, programs, and practices as needed. Oxford University Press is a department of the University of Oxford. It furthers the University's objective of excellence in research, scholarship, and education by publishing worldwide.

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Advanced Search. Article Navigation. Close mobile search navigation Article Navigation. Volume Article Contents. Benefits of Person-Centered Care Approaches. Shifts in Organizational Culture. Practice Recommendations for Person-Centered Care. Conflict of Interest. E-mail: sfazio alz. Oxford Academic. Google Scholar. Douglas Pace, NHA. Janice Flinner, MS. Beth Kallmyer, MSW. Cite Citation. Permissions Icon Permissions. Abstract Background and Objectives. What this literature review establishes is that there is nothing clear-cut about demonstrating scientific evidence for complicated, individualized, psychosocial interventions such as person-centered care.

Overall, the research has limitations including sample sizes, varied interventions within person-centered care models and finally, a paucity of funding and incentives for psychosocial research. Most certainly, more research is needed to continue to understand how to effectively measure person-centered care, what elements are required to make a difference and how does all of this translate into everyday care delivery practices. However, when examining person centered care through the combined aspects of available evidence mostly in residential communities , current best practices, expert opinion and common decency, it becomes clear that providing care based on knowing the person within the context of an interpersonal relationship in a way that supports individualized choice and dignity is difficult to argue against.

While the evidence in support of person-centered care models and interventions may not be wholly conclusive, there is sufficient evidence to support the following recommendations. The individual living with dementia is more than a diagnosis. This information should inform every interaction and experience. It is important to see the world from the perspective of the individual living with dementia.

Every experience and interaction can be seen as an opportunity for engagement. Engagement should be meaningful to, and purposeful for, the individual living with dementia. It should support interests and preferences, allow for choice and success, and recognize that even when the dementia is most severe, the person can experience joy, comfort, and meaning in life. Persons living with dementia should be part of relationships that treat them with dignity and respect, and where their individuality is always supported.

This type of caring relationship is about being present and concentrating on the interaction, rather than the task. A supportive community allows for comfort and creates opportunities for success. It is a community that values each person and respects individual differences, celebrates accomplishments and occasions, and provides access to and opportunities for autonomy, engagement, and shared experiences. Several tools are available to assess person-centered care practices for people living with dementia.

It is important to regularly evaluate practices and models, share findings, and make changes to interactions, programs, and practices as needed. Oxford University Press is a department of the University of Oxford. It furthers the University's objective of excellence in research, scholarship, and education by publishing worldwide. Sign In or Create an Account. Sign In.

Advanced Search. Article Navigation. Close mobile search navigation Article Navigation. Volume Article Contents. Benefits of Person-Centered Care Approaches. Shifts in Organizational Culture. Practice Recommendations for Person-Centered Care. Conflict of Interest. E-mail: sfazio alz. Oxford Academic.

Google Scholar. Douglas Pace, NHA. Janice Flinner, MS. Beth Kallmyer, MSW. Cite Citation. Permissions Icon Permissions. Abstract Background and Objectives. Table 1. Early Tom has always been a very independent man. He goes through his day as he always did, although now his wife Joan is always there for support if needed. Joan sometimes has to assist with a task, help with finding the right word, or give a friendly reminder. She also continues to include Tom in decisions, including treatments, future care and finances.

Middle Frank was a professional musician and played at all of the local and regional clubs. Since he played late night gigs, he was used to staying up late each night as well as sleeping late each morning. In his new home, Frank stays up late in his room, oftentimes listening to old records.

Staff let him wake on his own each morning and include that information in his care plan. Since there is a piano in the reception area, Frank often plays for other residents and visitors. Late Emily was an avid gardener. Her yard was perfectly kept with many varieties of plants, which she grew from seed. He loved fragrant bushes, especially lavender. One side of her yard was filled with beautiful bushes. Throughout the progression, she stayed involved in gardening. They kept fragrant cut flowers and plants in her room, especially lavender when available.

They kept a small satchel of dried lavender under her pillow, and also used a nice lavender lotion to moisturize her hands and feet.

Agitation in dementia: Are drugs the best treatment?

Open in new tab. Effects of person-centered care approaches to dementia care on staff: A systematic review. Search ADS. Google Preview. Staff-based measures of individualized care for persons with dementia in long-term care facilities. Valuing people as individuals: development of an instrument through a survey of person-centredness in secondary care. De Witte. Measuring person-centered care: A critical comparative review of published tools.

Psychometric evaluation of the English language person-centred climate questionnaire—patient version. Person-centered care for older adults with chronic conditions and functional impairment: A systematic literature review. Person-centered care for nursing home residents: The culture-change movement. Resident outcomes of person-centered care in long-term care: A narrative review of interventional research. Life worth living: How someone you love can still enjoy life in a nursing home-The Eden Alternative in action.

All rights reserved. For permissions, please e-mail: journals. Issue Section:. Download all figures. View Metrics. Email alerts New issue alert. Advance article alerts. Article activity alert. Receive exclusive offers and updates from Oxford Academic. The case studies exemplify the experiences of people with advanced dementia, a family member and paid carer in a range of care settings that care for people with advanced dementia. They illuminate a unique set of experiences and are set within particular care environments that are considered typical within each partner country. It would have been impossible for this study to have a true picture of the phenomenon studied without considering the context within which it occurred.

Moreover, the case study method is a useful strategy for the investigation of a complex phenomenon [ 11 ] such as the experience of advanced dementia care in different care contexts, geographical areas and cultures. Each case was considered as a unity of subjects that could offer a usual revealing set of circumstances within each context. The type of case study selected was a multiple case study defined by Yin as the one that enables researchers to explore differences within and between cases in distinct contexts [ 13 ]. Because comparisons are drawn in this type, it is imperative that the cases are chosen carefully so that the researcher can predict similar results across cases, or predict results.

Each team applied to the relevant ethical committees in their own countries and sought approval to conduct the cases studies. In Sweden and Slovenia, ethical approval to talk directly to people with dementia could not be sought within the timescales of the project so the professional workforce that had worked with or undertaken research on people with advanced dementia constituted the case study informants in these countries.

The inclusion criteria were that the person with dementia participating could demonstrate that they had been diagnosed with advanced dementia, defined as the stage that goes from the middle to the severe phase of the disease having a clinical diagnosis, as shown in Table 1. At least one of the three people with dementia within each partner country had retained verbal skills. The inclusion of family members was based on them having been or still being the main carer. The inclusion of paid carers was on the basis that they had supported the person with dementia for more than six months.

The study was conducted between January and April A total of 56 interviews was conducted; 21 of these were with people with dementia, 23 were with family members and 12 with paid staff from healthcare and social fieldwork.

A qualitative approach was taken. All interviews were face to face, conducted in a setting and at a time convenient to the interviewee. The researchers conducting the interviews were part of each partner team in each partner country participating in the Palliare Project. Researchers experienced in working with vulnerable groups conducted the interviews.

The qualitative technique selected was the open interview whose schedule comprised two main focuses that inspired the two open questions used as the starting point: a What works well about the experience or remarkable positive aspects in the advanced dementia caring process? As guidance, interviewers followed a list of topics corresponding with the categories used later in the analysis Table 2. All the questions were open ended and designed to explore conversationally the lived experience of care and caring in daily life aspects, specifying that we were referring to their physical, psychological, social and also economic needs.

Contextual information describing the environment of care was also recorded. Special tips for challeging behaviours: wandering, incontinece, repetitions, sundowning. Demographics and baseline characteristics are shown in Table 2. The type of analysis selected for this study was thematic synthesis, whose purpose was a progressive theming to form a chain of reasoning.

According to Thomas and Harden , it is a method for identifying, analysing and reporting patterns themes within data [ 14 ]. It organizes and describes the data set in rich detail and interprets various aspects of the research topic. It can be used as a realist method that reports experience, meanings, and the reality of participants.

Treating dementia in context; a step-by-step guide to working with individuals and families.

It also examines the ways in which events, realities, meanings, experience, and other aspects affect the range of discourses The current analysis was based on responses from people with advanced dementia, family members and caregivers, both professional and non-professional, according to the context. To get to consensus and reach data validation, a double triangulation of qualitative data analysis was conducted through a four-step analysis procedure as shown in Figure 1.

Table 2 shows the categories and subcategories of data that were developed from the narrative accounts and field notes during the first step in the data analysis. Later, in the third step, the cases were read back again to detect the themes that came up commonly across all the cases and their representativeness. The positive experiences were associated with the particular outstanding organizational cultures associated with each country in terms of the type of services, units and professional workforce.

The scope and type of provision of dementia care and support seemed to reflect the policy context in partner countries. For example, in southern Europe, policies tend to support family-integrated approaches whilst others tend to support individualized approaches to care and caregiving. There were many strong similarities in the negative experiences of care; that is to say, what works not so well within each country.

Table 3 illustrates the strongest positive and negative experiences of dementia care in each of the countries. Strongest positive and negative aspects of dementia care in each country Data analysis — second step. The main themes arising from the overall data analysis were: a When dementia is not detected and diagnosed early, it limits the support strategies that can be put in place in order for people to live well for longer. In some of the countries such as Spain, the Czech Republic, Finland, Slovenia and Portugal, a lack of training in recognizing and detecting dementia signs and symptoms was apparent.

This has implications for identifying people with dementia early and putting in place support strategies. We also found that the healthcare, social and welfare systems of these countries tended to take a more active role when the clinical situation is advanced and most of their interventions are based on clinical decisions.

It was in these later phases when the caregiver became visible to the systems. This has implications for carer support, involvement and partnership working. Opportunities are missed to support carers to support the person they are caring for, to support them both to live well for longer. Moreover, opportunities are missed to draw on the expertise of carers to work in partnership with the various care providers to plan and deliver care and support:. There was evidence that showed that this directly impacted on the quality and continuity of care for the person with dementia and their family caregivers.

It is important to remark that participants within the same countries, though in different care contexts, experienced quite different care plans and interventions. This appears to demonstrate a variety of approaches to advanced dementia care within countries:. When my wife will become worse, I have to be prepared. There must be someone that at the same time knows about how to care [for] a person with dementia [and] they need to be patient. This influenced the trajectory and type of care provided.

When the person with dementia sleeps well, both they and their family caregivers maintain better physical and mental health and experience less stress and distress. However, when the person with dementia has disturbed sleep patterns, they experience an increase in distressed behaviours.

Overnight sleep, rest and privacy were extremely important for carers, yet professionals and those not directly caring for the person with dementia rarely recognized the importance of this. The night-time experience of dementia appeared invisible to most professionals, and often to other members of the family and friends who were not primary caregivers.

The sleeping pattern of the person with dementia and the impact that this was having on the primary caregivers was often an indicator of the extent to which they were managing to live well. Finding ways to support people with dementia to sleep well and supporting carers to get enough sleep, rest and privacy is extremely important if we are to enable the person with dementia and the family caregiver to live well for longer and maximize their quality of life:.

At such times it becomes more difficult for all to sleep and rest. This was particularly noticeable in those countries where there was less support for non-professional caregivers. In these countries there was a strong demand for more carer support from professionals. Professionals also remarked on the importance of exchanging knowledge and experiences about their daily situations between different disciplines.

Use of resources, tips about how to face different situations, and communication skills in challenging scenarios were the most frequent topics:. This way, they gain new knowledge and learn about what their peers would do in a similar situation. It worked very well! She always became much calmer than without music therapy. We found that in the southern European countries the main concern was to provide comfort to the person with dementia, whereas in the northern European countries the emphasis was more on the safety of the person, and tools and supports that could enable the person to continue to live safely:.

This seemed to allay some of the symptoms and enhance the quality of life. In some cases, where the person with dementia had been moved from their home environment to another living environment home or institutional , they experienced rapid disorientation and even isolation:. It produced no results and her condition got only worse.

Overview of Person-Centered Care for People with Dementia

The goal is to reduce the burden for the family and to make it possible to live in the ordinary home as long as possible …. I think this is a good solution of our situation.

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Moreover, we found that there was a gap in evidence informed education on advanced dementia care for both professional and non-professional caregivers:. Sometimes they could distract her and sometimes not. We believe that this is the first published European case study of the advanced dementia care experience that includes the perspectives of people with advanced dementia, their professional and non-professional caregivers.

The data provides unique insights into the current needs and viewpoints of people living with advanced dementia. This study is an attempt to fill the gap that other authors previously detected in the qualitative experience of the people living with and involved in dementia caring process across countries with cultural, demographic and policy differences [ 16 ].

Often the voices of people with advanced dementia are not heard due to the complexity of eliciting data from those with diminished verbal skills, their vulnerability and the ethical issues associated with their participation in research.